Wife determined to carry on her late husband’s awareness raising work
Paul O’Connor had suffered with kidney disease since birth, and he knew only too well just how difficult life can be living with such an illness.
Paul had spent over six years on dialysis but hoped his quality of life would improve with a transplant, which he had in April 2016. Unfortunately, it didn’t work and his body rejected.
Despite the debilitating nature of living with kidney disease, he was determined to use his voice to raise awareness and to educate people just how serious it is.
In December last year, Paul sadly died at just 55 years old. Wife Clare, who he shared so many happy memories with, wants to continue Paul’s work in raising awareness and she has set up a tribute fund in his memory.
Here Claire tells us why Paul was so passionate about spreading the word and some of the ways he did it and talks about the difficulties of living life on dialysis.
Paul's passion for spreading the word
“Kidney disease itself, even without dialysis, has a huge impact on life, affecting everything in your body including your bones, memory and concentration, strength, taste, appetite, what you eat/drink, leaving you tired and affecting your sleep. There are many people that still don't realise the importance of looking after your kidneys.
“We tried to not let dialysis phase us or rule our lives, and for it just to be a part of it. While it was just a part of it, it was a huge part. We had wonderful holidays, but it's far from straightforward when dialysis is involved. Days need to match up, the paperwork needs to be completed at specific times, and everything agreed before you can even book the flights.
The need for careful planning
“A great deal of careful planning is involved - but the reward is worth it. Paul dialysed in Trapani (Sicily) and twice in Chania (Crete). When he had an issue in Chania after a fall the team at the unit there were marvellous and looked after him completely, not just focusing on dialysis.
“I was theatre manager at the Grand Opera House in York, and with the support of the staff there we set up a partnership with York Teaching Hospital Charity, as this was where Paul’s renal unit was.
“We arranged bucket collections after a number of shows each year, but the manner in which we were fortunate enough to raise as much as we did was also through the support of the production companies.
“When a show announced the collection was happening, and we'd advertised this on both our social media accounts and through the charity, it made a huge difference to the final sum. Some shows went further and agreed to read out a short speech on the effects of kidney failure and the importance of fundraising for the renal unit.
“Paul never stopped praising the work of the renal unit and the staff there. He posted numerous times on social media about this, with pictures. He used his voice to try and educate people on the effects of kidney failure, and for his fiftieth birthday he only agreed to have a party if we made it a fundraising event. We raised £800 in that one night alone!
The invisible disease
“One of his biggest bug bears was people saying that he looked well. He tried to teach that he might 'look' well, but that inside he was not. That kidney failure is an invisible killer. He used the post-transplant time to remind people that a transplant is a treatment, not a cure, and is not guaranteed to work (as his didn’t).
“One thing I said at Paul's funeral was that his health issues didn't define who he was, or who we were as a couple. While this is true, the reality is also that hospitals played a large part in our lives. We couldn't plan anything without thinking about dialysis.
“When I had an operation in Nottingham the unit had to really push for them to accept him for one day. When one of my sisters got married he had to rearrange a session, leaving longer than ideal in between because none of the units in the area could fit him in.
“If we wanted a weekend away, we couldn't travel until after he had dialysed and we had to make sure we were back in time for the next session. Renal units are having to cope with an increasing number of patients, but with the same capacity, so you can't just change a session.
Hope for more research in Paul's legacy
“I knew straightaway that rather than flowers or general donations I wanted donations to Kidney Research UK, and although we hadn't talked about it, I knew that Paul would want that too. The prime reason was to continue Paul's legacy in the hope that research is developed that will help families to not suffer the same as we all did, and in particular Paul.
“Treatments need to be improved and the quality of life for patients and their family's needs to improve too, with the support being there for both. Creating the tribute page (I also put a QR code on the order of service to enable easier donating!) meant that we were also able to see the impact that Paul had on so many people's lives and that we could attribute the donations specifically to his memory.”
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